Diagnosing lupus is complex and often lengthy because its symptoms resemble those of many other conditionsrequiring doctors to rule out other possibilities through various tests.
A diagnosis of lupus involves assessing various criteriaincluding organ healthmuscle conditionand blood analysiswith a positive antinuclear antibody (ANA) result being a significant factor.
Early diagnosis and treatment by a rheumatologist are crucial to managing lupus and preventing long-term complications like organ damageas there is no single definitive test for the condition.
Lupus is a chronic autoimmune condition that causes symptoms such as joint painfatigueand skin lesions. The condition can be difficult to diagnose because these symptoms are shared with many other conditions.
Lupus is often diagnosed in people between 15 and 44 years old. It’s also more commonly seen in people assigned female at birththough people assigned male at birth can also develop lupus.
Oftengetting a lupus diagnosis can take years. That’s because no single test can confirm a diagnosis of lupusthough a couple of tests may strongly indicate lupus.
A doctor will start by discussing your symptoms. You’ll review your medical history and any conditionsespecially autoimmune disordersin your family. The doctor may need to rule out several other conditions before confirming a lupus diagnosis.
Read on to learn more about what to expect and how to advocate for yourself.
A doctor will ask you to describe your symptoms. They will also do a complete physical exam and examine your skin for skin lesions and rashes. Skin lesions and rashes are commonly seen in people with lupus.
In addition to learning more about your symptomsa doctor may use the following tests to help them make a diagnosis:
Urine tests:Urine tests can be performed to look for proteinbloodand other cells in the urine. If presentthis may indicate inflammation of the kidneys from lupus.
Blood tests:Blood tests can look for levels of blood cellsproteinsand antibodies in your blood. Many people with lupus have an antibody called the antinuclear antibody (ANA) in their blood. A positive ANA test doesn’t always mean a person has lupusbut it helps doctors get closer to confirming a diagnosis.
Skin biopsy: A skin biopsy is a procedure that removes a small tissue sample from a lesion on your skin. This sample will be studied in a lab for signs of lupus. This may not be needed if you have the typical “butterfly rash” that’s often seen in those with lupus.
Kidney biopsy: Sometimesa kidney biopsy is performed so that kidney tissue can be seen up close and inspected for signs of autoimmune disease.
A wide variety of criteria are considered during a lupus diagnosis. The 2019 European League Against Rheumatism criteria even mandated that you need to have a positive ANA result before the diagnosis of lupus is even considered.
These criteria look at the health of your organsmusclesbloodand more. Each category receives a scoreand the total score determines the probability of having lupus. ANA antibodiesautoimmune damage to the skin and kidneysand a history of lupus symptoms are generally enough to confirm a diagnosis.
Howeverthese criteria are guidelines and not absolute for diagnosis. Your doctor may also use different diagnostic criteria depending on the type of lupus.
Systemic lupus erythematous (SLE): SLE is the most common type of lupus. Typicallywhen people use the term “lupus,” they’re referring to SLE.
Cutaneous lupus: This type of lupus affects the skinand is further broken down into three subtypes: chronic cutaneous lupus erythematosus (CCLE)acute cutaneous lupus erythematosus (ACLE)and subacute cutaneous lupus erythematosus (SCLE).
Drug-induced lupus erythematosus:Drug-induced lupus erythematosus is a raretemporary form of lupus caused by certain medications. Most of the drugs that can cause drug-induced lupus erythematosus are prescribed less commonly today than in the past.
Neonatal lupus erythematosus:Neonatal lupus erythematosus is a condition passed on in the womb. Children with neonatal lupus erythematosus are at increased risk of heart block and other serious heart conditions.
Cutaneous lupus
In addition to results from the tests listed aboveCCLE is typically diagnosed after a skin biopsy. Tests such as biopsies won’t help determine whether a skin lesion is caused by SLE or drug-induced lupus erythematosus.
Drug-induced lupus erythematosus
If you’re taking a medication with a known link to drug-induced lupus erythematosuspart of the diagnostic process might be stopping that medication. If your symptoms stopthat can confirm the diagnosis and resolve your drug-induced lupus erythematosus.
Neonatal lupus erythematosus
Neonatal lupus erythematosus is rarebut todayat-risk pregnanciessuch as pregnancies of people who have SLEcan be monitored closely. Neonatal lupus erythematosus can often be diagnosed before birth.
An unborn baby can be monitored in the womband further testing can be done if a weak heartbeat is detected. Treatment can be given before birth or immediately after birth to reduce the risk of heart-related complications.
An unborn baby’s heart can be monitored in the womb with echocardiogramsand the birth-parent’s blood can be tested for anti-Ro/SSA and anti-La/SSB antibodies to confirm the diagnosis if a weak heartbeat has been detected.
It’s most common symptoms of lupus begin when someone is between 15 and 44 years old. Howeversome people with SLE are diagnosed with what’s known as late-onset lupus. Late-onset lupus symptoms typically begin at around age 59. Symptoms can be vague and easy to mistake for simple symptoms of aging.
Even doctors sometimes mistake late-onset lupus for types of arthritis or other autoimmune conditions. Howeverthe overall diagnostic process is the same. Your symptomsalong with urine testingbloodworkand biopsieswill all be reviewed by a doctor to help confirm a diagnosis.
There can be years between the first lupus symptom appearing and the final diagnosis being confirmed.
Healthcare professionals sometimes call lupus an “imitator” because the symptoms of lupus are similar to those of many other conditions. This can make lupus difficult to diagnose. It often takes a long time to get a lupus diagnosis.
How hard is it to diagnose lupus?
A rheumatologist who specializes in lupus should be able to diagnose the lupus. Butfor doctors who are less familiar with lupusit can be difficult to diagnose.
There isn’t a specific test that can prove lupusand its symptoms are shared with many other chronic conditions. Doctors might need to rule out several possibilities before determining whether lupus is the answer.
A primary care doctor may be able to order an ANA screening testbut referral to a rheumatologist will be important to confirm the diagnosis. Don’t be afraid to advocate for yourself if you need a referral to a rheumatologist or if you cannot get testing for lupus.
Who is most likely to get lupus?
Anyone can get lupusbut there are known risk factors that are linked to the condition. These include:
Lupus can be difficult to diagnose because the condition has symptoms that overlap with others. This can make lupus present as a different condition and can delay the diagnostic process.
Additionallythere’s no single test that can diagnose lupus. Insteada physical examand results from a urine testblood testand biopsy will all be looked at together to confirm a diagnosis. In some casesthis can take years of trial and error as other conditions are eliminated as possibilities.
If lupus is suspectedit’s important to see a rheumatologist as soon as possible to confirm the diagnosis. Medications that reduce the overactive immune response in lupus can then be prescribed. It’s important to start treatment as early as possible to avoid long-term complications like organ damage.
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